FAQs ABOUT MY MS

Feel free to AMA
  1. Is it genetic?
    Kinda? It is believed to have both a genetic component and an environmental component. But no one really knows. The rate of MS for the general population is 0.01%. If you have a blood relative (Parent or sibling) with MS your chances go up to 0.1%.
  2. What causes it?
    No one knows. research is being done… If you can figure this out, you will probably get the Nobel Prize for medicine. I have suspicions for what caused mine, but that is only my opinion. The general thought is that there is a genetic propensity, with an environmental trigger.
  3. Have you tried…?
    Maybe. Keep in mind that I was an RN working as the coordinator of the multiple sclerosis clinic at the university of Minnesota. I was board-certified in multiple sclerosis neurology. I firmly believe in evidence-based medicine. If you have a suggestion, show me the research. By the way, if you say "research can be used to prove anything," it is a clear sign to me that you know nothing about research theory.
  4. You seem better today than yesterday.
    Probably. Unfortunately, the nature of MS is highly variable. I literally cannot predict how I will be from hour to hour, much less day to day.
  5. What else do I need to know?
    Spoon theory. If you know ANYONE with a chronic illness, you should be familiar with spoon theory. The famous Spoon Theory can be found here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
  6. What type of MS do you have?
    Suggested by   @holly70
  7. I started out with Relapsing-Remitting and have moved to Secondary-Progressive. Basically, I will get steadily worse, and the only thing we can do now is try to slow it down as much as possible. So, where I was once running triathlons when I was diagnosed, I am now essentially in a wheelchair and using a walker for transfers.
  8. From @holly70: what medications are they using to slow down SPMS?
    This is an area of great research. For now, my physician and I have me getting an infusion of Solu-Medrol, 1 g, every month. Not only have we seen a marked effect on other patients with S PMS, but it has slowed my progression down too.
  9. From @IveGottaTellMel: Does weather affect your symptoms?
    Yup. Many with MS are sensitive to heat. An increase in body temp "short circuits" already fragile nerves. My sensitivity to heat and humidity means living in air conditioning and avoiding direct sun all summer. If I need to, I have a cooling best. Spring and Fall are awesome! And, as much as I hate it, Winter is pretty good - although the extreme cold of Minnesota January makes me pretty stiff.